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It is often recommended that parents take the time to decide what kind of future life they would like for their child and then describe it in a letter of intent to be included in their estate planning documents. The letter can address their hopes and dreams and reflect what they want for their child in all of the major life areas including living arrangements, child's likes and dislikes, recreation, social and community interests. While not legally binding, the letter can help the future caregiver gain an understanding of the family's vision. The letter of intent can include:
Share the letter with family members and trusted friends to help build support around your vision. Review the letter on a regular basis and keep it updated to reflect your child's needs and your changing goals.
When set up properly, a special needs trust can provide the funds to supplement, not replace, government funded benefits. It is critical that you discuss your options and set up a special needs trust with a qualified attorney. The special needs trust provides the ability to pay for items and services beyond the basic necessities of medical care, room and board, employment, basic personal needs, care and supervision funded by government benefits programs. Funds from the special needs trust can be used to provide enrichment, such as recreation, trips, electronic equipment, gifts, medical / dental expenses not covered by Medicaid, and other personal expenses. For example, if your child's computer or television broke, money to purchase replacements could come from the special needs trust. If your child enjoys going on vacations, this too could be paid for by the trust. There are several sources of information that can help you:
Congress passed a law creating a new type of savings plan for your loved one who has a severe disability. The “Achieving a Better Life Experience (ABLE) Act” was “designed to provide new opportunities for individuals and families to save for the purpose of supporting individuals with disabilities in maintaining their health and independence.” Beginning January 1, 2015, the ABLE Act authorizes each state to establish and operate ABLE programs, similar to the college planning 529 account. The program allows:
An ABLE account provides a way to help provide a better quality of life for a loved one with a severe disability, and does not jeopardize government benefits being received. Under this new legislation, each state is enabled to create an ABLE 529 account.
While government agencies recognize special needs trusts, they have developed complicated rules and regulations. Special expertise is required in estate planning because laws affecting individuals with disabilities can change frequently. This is why it is critical that you consult an attorney experienced in estate planning for families who have a child with special needs, not just one who does general estate planning. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose a wide range of needed government services and assistance. Don't be afraid to interview special needs attorneys and ask questions before deciding who would be a good match for your individual situation:
To find a lawyer who specializes in special needs estate planning, you can check with your local disability organizations, advocacy agencies and other parents. Don't select an attorney based only on someone's recommendation. Be sure to interview and ask questions before you decide. It is important to do your homework and select an attorney that specializes in special needs trusts. There are several resources that can help get you started:
Cincinnati Children's does not endorse specific attorneys. It is important to thoroughly research and ask questions before you select an attorney specializing in special needs trusts. To help with your information gathering, several Cincinnati area attorneys include general estate planning and special needs trusts information on their websites:
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